It is important for you to seek care as soon as you feel an MG crisis coming on to ensure proper medical intervention. If you are feeling short of breath, it is very important to call 911 or get medical help immediately.
MG Exacerbations & Crisis
Living with myasthenia gravis can be difficult at times, and it is important to be prepared for the future. Knowledge is key to understanding how to deal with a crisis or exacerbation, enabling you to be your own best advocate. An exacerbation, or flare, is when your symptoms increase in frequency and/ or become more severe. It is important to contact your doctor about any change in symptoms or issues. Your physician can intervene to ensure that the exacerbation does not become a crisis.
MG Crisis vs. MG Flare
MYASTHENIC CRISIS affects a small percentage of people with MG. It occurs when the respiratory muscles get too weak to move enough air in and out of the lungs. The person is unable to breathe and a machine (ventilator) is necessary to help them breathe. The machine may do this through a tube into the airway (endotracheal intubation) or a tight-fitting mask on the face (BiPAP). Myasthenic crisis involves the respiratory muscles, so it is different from an MG flare (exacerbation).
MG FLARE or exacerbation describes a time when you have weakness in some or all the muscles in your body, but you do not need assistance to breath. MG flares vary from person to person but may include worsened double vision, slurred speech, increased arm weakness, falling, unsteady walking, and difficulty swallowing. Many muscles throughout the body may weaken during an MG exacerbation, but myasthenic crisis refers specifically to severe, potentially life-threatening weakness of respiratory muscles. Myasthenic crisis typically develops after days to weeks of worsening symptoms. Rarely, MG crisis can develop more quickly. It is important to seek medical care immediately when symptoms of possible MG crisis are present.
Being Prepared Before an MG Crisis
Knowing what to expect and being prepared in case of a crisis is crucial to a good outcome. Tracking your symptoms reguarly can be helpful so you and your caregiver have a sense of what's normal for you -- and what is not. Create a packet of important medical and insurance information to take to your doctor or the emergency room at a hospital. Keep this packet in a safe place where caregivers, EMTs, or others can find it. You can stay prepared by compiling materials or downloads below.
Pack the Essentials – Pack a set of essentials in a small go-bag so you'll be ready just in case. Include printouts of the downloaded materials and lists below as well as toiletries, comfortable clothes, a neck pillow, headphones, and extra-long phone charger. Bring any medications you take at home as well as a list of all medicines.
Cautionary Drugs List - Certain medications and over-the-counter preparations may worsen MG symptoms. DOWNLOAD the LIST of CAUTIONARY DRUGS and have it available for EMTs, emergency room staff, and medical professionals in both an in or out-patient setting.
Emergency Alert Card – This helpful wallet card can be printed out and presented to medical professionals so they know you have myasthenia gravis. The card will also help EMTs and medical providers understand how to treat your MG crisis. You can download the card to print out. This is the Spanish language version.
List of all treatments and medicines – Include a list of ALL medications and vitamins you take, including dosage, unit amounts, and frequency. You can also include your pharmacy information.
Emergency Phone Numbers – Have an accessible list of phone numbers and email addresses for your caregivers; medical professionals including nurses, neurologists, and other doctors; and emergency contacts such as spouse, family members, and close friends. Make sure you have contact information for anyone who can help you in an emergency.
Print out MG Emergency Brochures – MGFA offers two emergency brochures for first responders and caregivers. Print and have these with you in the event of an MG crisis to show EMTs and medical professionals. These guidelines could save your life. You can find them below.
Download the MyMG Mobile App – The app enables patients and caregivers to keep track of symptoms and their severity as well as treatments. Use the app on a daily basis to track your symptoms and show the symptom and treatment graphs and history to your doctor, neurologist, or emergency professionals. You can DOWNLOAD the MyMG Mobile App here..
MGFA Patient Packs – We offer printed packs of information that include these materials and other printed brochures. If you would like to request a hard copy printed pack, YOU CAN COMPLETE THE FORM HERE.
A potentially life-threatening complication of myasthenia gravis. When you are in crisis, the muscles you use to breathe can become so weak that you struggle to get enough oxygen. The muscles might be those that keep your airway open or your diaphram. This is called respiratory failure, and mechanical ventilation is required to ensure you can breathe and allow the muscles to rest. Some patients use BiPAP, while others must be intubated.
Recognizing the signs of a flare up may prevent you from going into crisis, so always notice how you are feeling and don't be afraid to seek medical help.
Knowing When You Need Medical Intervention
While MG complications are treatable, myasthenic crisis is a life-threatening condition that affects breathing and requires immediate treatment. It is important to keep in mind that regular care and treatment with your healthcare provider can help prevent flare-ups and potential crisis. Recognize signs of increasing weakness, particularly shortness of breath and difficulty with swallowing, and consult with your physician or go to the emergency room for intervention.
It is important for you to seek care as soon as you feel a crisis coming on to ensure proper medical intervention. If you are feeling short of breath, it is very important to call 911 or get medical help immediately.
Careful assessment and monitoring is required, as myasthenic crisis presents differently from other forms of respiratory failure. View this informative video from Deputy Fire Chief Michael Riley describing how EMTs handle MG patients in an emergency situation.
For more information, see our brochure MG Emergency Management for First Responders.